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23.01.13

Like so many others with a chronic health problem, every day of my life is a high wire balancing act. Without a net. On a bad day, I can do very little, and I fret about all the tasks piling up. On a good day, it’s almost impossible not to try to make up for lost time, and catch up on everything. And then I overdo it, and end up paying with a few more bad days. I have a lovely doctor, and he is always impressing upon me that this is the main struggle of ME/CFS. Working within your limits, every single day, instead of seesawing between forced inactivity and frantic catchups.

I have the added problem (again, as so many of you do) of having two conditions that often go hand in hand, but make different demands on my body. As well as the ME/CFS, I have fibromyalgia. If I do too much, physically, the ME flares. If I do too little, physically, the fibro flares. If I do too much emotionally, both flare. Stress is a major trigger, but it’s so difficult not to get stressed when you have a to-do list as long as your arm, and absolutely no strength or energy to do any of it. It’s also distressing and emotionally taxing (and therefore physically taxing) when people around you show ignorance or lack of compassion about your situation. I kind of got used to this when I was battling depression, but I’m having to get used to it all over again now that I have chronic physical illnesses. My goodness, people can be so thoughtless, so lacking in empathy or understanding.

But then, like mental health problems, ME/CFS doesn’t usually have any obvious physical symptoms, that people can look at you and see that you are sick. You usually look fine. If I’m in pain from the fibro, that may show a little more, especially when it flares up in my hips or ankles, and I can’t walk without limping. But for the most part, I look fine. And I can work, can’t I, so there can’t be too much wrong with me!! Yes, I can work, but that means I can do very little else. My doctor keeps urging me to give up work, but as long as I can manage it, I feel I must carry on. I want to carry on. But it means a lot of other things in my life are automatically excluded, because there’s nothing left for them. That’s the balancing act. I’m sure many of you have first hand experience of it.

But it’s not all bad. Far from it. Tony is wonderful, fiercely protective of me, and does everything he can to lift the load from my shoulders. This means that my restrictions often become his restrictions, but he’s very generous and kind, and doesn’t grumble. It hurts him as much as, perhaps more than, me, when people are ignorant and unsympathetic. But like me, he very much treasures the people in our life who are loving and supportive and empathetic. He is far better than I am at seeing my capabilities realistically, knowing when I can do something, noticing when I’m overdoing it. I’m very lucky to have him in my corner.

I want to send each one of you who are also coping with health problems – whether physical or mental – a very big hug today. And an extra one on the side to those of you who are caring for your unwell loved ones. Tony & I, we understand your struggles, we send you our love & sympathy. One day at a time. We can do this, one day at a time.

5 thoughts on “23.01.13”

Both my son and my sister battle with chronic auto immune issues. One of the things I have learnt so much about life from, is their optimism and amazing positive attitudes, in life, you need to play the hand you are dealt. No point regretting what might have been,just go for the max, after a year of personal cancer scares after which I am thankfully fine, I am trying to get there. But I know that both of them teach me humbling and amazing lessons everyday – speak to Tony
he will know what I am going on about, I am loving your yarn and the pleasure of knitting with it is helping me cope with the bad things in life.

I too am incredibly lucky with my partner. Andy is a real treasure. When I gave up work about 10 years ago, he was very supportive about it. As my health has got worse he has done more and more, until now he does pretty much everything. He works in a job that requires large amounts of concentration and often has to work extra hours to liaise with overseas clients. He will then come home, sometimes after doing the shopping, cook, clean, do the laundry and then chat to me. I don’t know how he does it. He never snaps or argues, and I sometimes wish I had his ability to shrug off stress. People often pity me for my life, but I’ve actually never been happier. I have a wonderful man, I’m getting on pretty well with my family, my friends are supportive and understanding and I have my craft and online life. If only I didn’t hurt so much, it would be perfect!

Hi Dee. I’m with you. I struggle daily with back/leg/neck/foot pain and from the outside I look “normal” too. I too am blessed with a wonderful, supportive husband. I’m so glad you are too. I pray daily for healing that has yet to come. I’m adding you to my list to pray for too:-) x

Thank you for a(nother) lovely and inspirational post; you’ve described the struggles of living with these illnesses perfectly. Someday, I may have a tiny fraction of your courage and will share your wisdom with some of the people in my life. For now, one day at a time.